It has been nearly exactly a year since we started ABA therapy with Michael. Last year in November he started his first four-week intensive period. Because of this he has had to undergo a reassessment. Every year he will do this, to see which skills he has made progress in and which important life skills he still needs help with.
When I started ABA therapy I was so unsure about it. I planned on trying it for three to six months and then stopping at the smallest sign of trouble. In that first, screaming, month I cried every night about it. We were so scared that we were going to scar Michael for life, or ‘normalise’ him, or any of the other rubbish written about ABA therapy.
Of course that is not what it is about at all. ABA therapy is about teaching him life skills by breaking them down into tiny steps. Ignoring tantrums is part of it but only a very small part these days – it is not about punishment of meltdowns or any kind of punishment at all, in fact. There are discrete trials and repetition, and this works fantastically with Michael who would likely have been ‘unteachable’ using other methods. But there are also lots of cuddles, tickles, and chasing him up and down hallways.
Part of the reason why I started this blog was to show people what early intervention could look like, if it was done right. No, my child isn’t miserable. If he is, he’s doing a pretty good job of pretending to be happy, so go Michael. And here, one year later, I am very happy with my decision to try this therapy.
In the spirit of total transparency, I am going to discuss in a bit more depth the kinds of programs that we have done with Michael this year, and what is coming up for him. But first, I will tell you what stage he was at before he started and where he is at now, one year later.
Michael’s First Reassessment
The assessment tool they use at the Lizard Centre (for children as young as Michael was) is the Early Start Denver Model Curriculum Checklist for Children With Autism. It is broken up into Levels for age-groups. For example, Level 1 is 12-18 months, Level 2 is 18-24 months etc. It is not a standardized test and is geared towards the skill level of children on the spectrum. So for example, since most children on the spectrum will have problems with receptive communication his result in a standardized test would have been a lot lower than it was on this test. So keep that in mind.
Anyway this was his result in Level 1 skills in his latest assessment:
|Domain||% of Level 1 Skills mastered in November of 2015 (Therapist and Parent Report)||% of Level 1 Skills mastered in November of 2016 (Therapist and Parent Report)|
If you look at the right column by itself, it’s not a great result is it? This is the skill level of children at the age of 12-18 months. His Level 2 assessment was mostly zeros so I won’t put it in. He did get 10% in receptive communication, 13% in joint attention and 20% in social skills. Michael is 2 years and 9 months old – that’s 33 months. He should have 100% of these skills. But here’s why I’m actually totally and completely ecstatic about these results.
When he started, his receptive communication skills, expressive communication skills, cognition skills, play skills, and fine motor skills were all assessed at the level of a 0-6 month old. Now he’s well into the 12-18 month range, so he has improved tremendously in one year. In every single area, he has improved a lot.
Life Skill One: Imitation
I have written previously about how Michael is learning imitation and why it’s important. It is part of learning to learn – until he learns to imitate well, it will be hard to teach him most other tasks.
At the moment, Michael has many programs in place that aim to teach him imitation, and it’s improving out of sight. He can imitate one step actions with toys (like banging a drum, or pressing a button). It took us about seven months to master this program but it’s done. Now he is up to imitating a two –step sequence. For example, first bang a drum, then shake a maraca. This will eventually increase to larger sequences. He is also learning to imitate actions within songs like wheels on the bus, or ‘If You’re Happy And You Know It’.
More recently, he’s started to learn imitation of ‘invisible actions’ (like tapping his own nose, patting his own head). It is much harder as the actions are much closer together (the head, different to putting hands over his eyes, which is different to tapping his nose). Why does he learn these things? Because the next step will be to learn imitation of oral-facial movements. Things like wiggling his tongue, blowing raspberries or puffing his cheeks. And of course these skills will be extremely important when he starts to learn to talk and to enunciate.
Life Skill Two: Cognition
Michael’s cognition programs are his matching programs. They involve things like matching identical objects (which he can do) and matching pictures to objects (which he is just starting to get the hang of).
I place two objects in front of him (say, a sock and a ball) and hand him a copy of one (say another sock). I then get him to match the sock to the sock. Then increase it to a field of three (so there might be a sock, a shoe and a ball to choose from). Each time I offer them I will swap them around. Please note these are not flashcards, but actual 3D socks and balls.
When we started these items were identical (so identical balls, identical shoes), then he learned non-identical items (different coloured socks, different shoes). He didn’t get the matching thing at all at the beginning. It was months of nothing. We thought he might have trouble seeing in front of him. And then suddenly, something just clicked, and he started to get 100%. With 3D matching anyway.
At the moment he is up to matching a picture of an object to a physical object (picture of a sock goes with the physical sock, not the ball). He is really struggling with the whole concept of pictures and what they do or don’t represent, and this is obvious in the way his results for cognition are lower than for other programs.
The next step will be learning to match identical and non identical pictures and eventually sorting objects by colour. And of course sorting them into categories, at a much later stage.
Life Skill 3: Personal Independence
Michael’s personal independence was his strongest point when we started at Lizard, because it was one of the few things he was motivated to learn. But it is now one of the weakest areas. For that, I have to take the blame. I haven’t been prioritizing it.
I am starting to fix that now though. Personal independence is things like eating with a fork and spoon or drinking out of a cup (a current program). Michael is currently learning to take clothes off with some assistance, wash his hands and brush his teeth. He is even learning to put his dirty clothes in a hamper and put his dirty tissues in the bin.
Life Skill 4: Receptive Communication
Amazingly, Michael’s receptive communication is one of his stronger areas at the moment. I think this is because it was the weakest area when we started, and for safety reasons I prioritized it.
His receptive communication is how many words he understands. We started this program with some really basic skills. Things like turning to a loud noise, and responding to someone’s voice by turning towards them. We had programs to teach him to follow a point. One in particular was to follow a point and put an object in the container we were pointing to. That one took about two months.
We have taught him to look at someone if they call his name (although he still doesn’t do it every time). We have been singing to him and he has been smiling and looking at us (yay!). He also now understands words like ‘stop’ or ‘no’. He doesn’t react every time, especially if he really likes what he’s doing. But I know he understands them now.
He has about twenty verbal commands that he now understands. Simple one word ones like ‘give me’, ‘come here, ‘stand up’ or ‘sit down’. We practise them every day because if we don’t, he forgets them. There are still about fifteen more basic ones to learn.
Life Skill 5: Expressive Communication
I’m not surprised that this is still one of Michael’s weaker areas. He doesn’t even babble with the intention of communication something.. Michael just babbles because he likes it, at this stage (and I like it too, it’s so cute!). Unfortunately there’s not much we can do about it at this stage. This is mostly due to the fact that he doesn’t imitate sound, and therefore speech therapy is not useful at this stage. All we can do is reward him every time he babbles so he gets lots of hugs and kisses. We also observe if the babbling is increasing.
But this is not just about talking. When we started, if Michael wanted help he just screamed. Stood in front of what he wanted and threw a tantrum. Now he has started to ‘ask’ for help by giving me an object. Or he comes to find me, takes my hand, and leads me to where the toy/food/etc is.
We also spent about six months teaching him to point (actually physically make a point). Now we are teaching him to point to what he wants. So I offer him two things, and he has to point to the one he wants. It’s going very quickly. The next step will be to teach him to point to something he wants that isn’t immediately beside him, called distal pointing.
We are also teaching him to give us a card with a picture of what he wants on it. There is an ‘I Need Help’ card and cards of his iPad or favourite food. He is learning the PECS communication system. With this program, he learned to give us a card for an item. Then to travel to the book, get the card, and come back to us. Now he is also learning to discriminate . So there are several cards on the book and he has to choose the right one. It takes him a long time due to his problems with understanding pictures but there is definite progress.
Life Skills 6/7: Play/Fine Motor Skills
When we started, Michael frankly did not have play skills. He did not play with toys, at all. He used to slide puzzle pieces behind him. That was it. Unfortunately he is just not interested in any kind of toy play. Mostly he stims with them, because he doesn’t know what else to do. With ABA therapy we can use the things he is motivated to do (watch cartoons, eat nice food) to teach him to play with toys. This in turn improves his fine motor skills.
He has been learning to play with a wide variety of toys this year. Cause and effect toys, pop up toys, musical toys. Everything you can imagine. We buy about ten toys for every one that he finds remotely interesting. I have so many toys now I am scared to venture under the house. I need another house for storage.
But the reward is that he’s learned so much this year! He can roll cars, put ten pegs into the pegboard, and stack eight blocks. His pincer grip and scribbling is progressing nicely. He can do the ring stacker or nesting cups. Even eight piece jigsaw puzzles are progressing quickly. My little genius can even put his toys away after he’s done!
Life Skill 8: Gross Motor Skills
Michael tends to be over cautious when it comes to his gross motor skills. He always wants you to hold his hand when going up and down stairs. Or he kneels down and does it on his bum like a baby. He can’t jump yet and seems too scared to try. But he is interested in balancing on beams etc so we are considering putting him into gymnastics to work on gross motor skills some more. Swimming is also something I have been working on with him but unfortunately rarely as he drinks the water like juice and gets gastro every time.
To me, one of the most important skills that Michael will need in life will be ball skills. Little boys past a certain age just don’t talk about anything else. Even big boys. It’s all sport. Either they are playing it or they are watching it. Since Michael is quite interested in balls, and loves running around, it may be a great way to channel his energy.
One of our first programs with Michael was teaching him to kick a ball. Now we are working on passing it back and forth with another person. Throwing and rolling are also on the list.
Life Skill 9: Self Control and Resilience
Without a doubt, Michael’s biggest behavioral challenges relate to his ADHD. He just can’t concentrate on what’s in front of him, or sit still. I’m not talking about for a minute. I mean even two seconds. We have had programs in place from the beginning where we gradually increase the amount of time he spends on a task. Plays with a toy for two seconds, then five, then ten. Looks at a book. We are teaching him that it is ok to zone out for a bit, as long as he can bring himself back and continue with the task at hand.
When we started therapy he had many difficult behaviours. He threw tantrums all the time, mostly because he was bored. But if I tried to do anything about it, he would tantrum because I was in his personal space. I couldn’t win. Since we started therapy, he has had one meltdown in twelve months. On a day with no therapy. His tantrums are few and far between (for a two year old).
I have written a post about handling difficult behaviour, and we follow those methods closely. A lot of it has to do with giving him other ways to communicate his needs, not rewarding bad behaviour and rewarding good behaviour. He can tolerate family members, displays no aggression and can sit with us for up to five minutes while playing with toys he likes.
Life Skill 10: Social Skills
Michael is going to be a social butterfly one day. He loves watching other children play. I have seen him this year try to initiate contact with other children many times. He just doesn’t quite know what to do with them once he has their attention. And of course, it is physically hard for him to be near them for long.
As part of his social skills, we have taught Michael to make eye contact. This was very easy, since it doesn’t seem like it’s very hard for him. In fact he often turns my head with his hands and makes me look at him.
He has learned to wave. First, just to physically wave. Then to wave when someone says hi or bye. And make eye contact. He does it so well now that we have started teaching him to initiate waving without someone saying ‘hi’ or ‘bye’.
Life Skill 11: Peer Interaction
We have also been teaching Michael to tolerate being near his peers. I do this by putting him near one or two cousins around his age, and rewarding him for staying. I encourage him to play near them and gradually increase the amount of time. We’re talking five minute intervals at this stage, but it’s definitely increasing.
I also reward him for engaging in play with them. Yesterday, we were all monkeys jumping on the bed together (Michael loved it!). We do ‘ring around a rosie’ and ‘If You’re Happy And You Know It’. Once he can do it comfortably with two children, we plan to increase the number gradually up to six at our local preschool.
Road to Success
I know these are all very fundamental skills. There will be many children, even with autism, that have more skills that Michael has. Even without therapy. But these skills might save his life one day. Young adults with autism are 2.5 times more likely than adults without autism to die prematurely. A lot of this has to do with bad diet, obesity and the inability to communicate with hospital staff about pain. We have, through early intervention, helped Michael with the first and second already. We are working on the third. And most importantly, making him a much happier and more resilient little boy in the process.